Steroids PMR worked but triggered depression

Posted by sunnysky7711 @sunnysky7711, Sep 19 3:22pm

I started steroids in April for newly diagnosed PMR. They worked immediately in the honeymoon stage. I am steroid sensitive in regards to depression. I also suffer from chronic UTI’s. Got 3 UTIs since April, gained 9 lbs and then anxiety and depression the rest of the summer. Tapered down. Doctor considering Kevzara and bloodwork for it just got back to clear for Kevzara. I feel like I am forced to choose between anxiety & depression or PMR pain. Maybe the Kevzara won’t affect me as strongly as the steroid. Also was just diagnosed with a rotator cuff tear & need surgery on top of it all. When it rains it pours.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Search this site…..lots of us like Kevzara. It helps taper off prednisone. I was off prednisone by the time the Kevzara kicked in. It takes up to 3 months.
Hang in, we are here for each other .

REPLY

@sunnsky7711. Sorry to hear about the complications. Poop does come in piles! But, it sounds like you are on a good path of research and discovery for yourself. I would not pit PMR vs. Depression/anxiety. It is not one or the other. You can beat PMR with the Kevzara which acts completely differently than the prednisone. Sounds like you are going in the right direction towards health with Kevzara . Lots of help with Kevzara available here.

I would like to suggest that it may not be the Prednisone that is creating the anxiety and depression. An alternate idea is that it is the PMR. I found that, for me, the IL6 and other nasty cytokines (ones in overdrive for no apparent reason) , that are major players in PMR, do the mood and mind alteration That is not a scientific fact but my opinion. I felt like, and others have written ,that IL6 is the devils molecule. It can actually create depression and a sense of doom according to one study that I read (and cannot find for referencing). I certainly had that at 3-4 AM every morning while on my PMR journey (pre-prednisone). I had terrible nightmares unlike any other in my life my first weeks of PMR. I woke in dread. The "boogie man" was quite extreme at those hours of the day for me.

I also would suggest that depression/anxiety is part of a response (normal response?!) to a frightening and chronic illness. Why would we not have a feeling of hopelessness when our lives so quickly have changed for the worse? It is terrifying and nobody without PMR seems to get it. It is quite lonely, I recall. I went from being very vibrant (physically working on my farm and skiing deep powder in CO) to not being able to dress myself within a week. That scared me to death at first and then the uncertainty of my future settled-in in the next few weeks. I figured I was doomed to eternal pain and would die without having been able to do anything more. It was so sad to see myself dying (I thought). I really saw my life and actions coming to an end. I also had anxiety about what I would do about all the loose ends in my life , both physical and emotional. It was a dreadful state that I did not even share with my therapist . I was so hopeless. However, when I took prednisone at its full dose, I started to see a glimmer of hope as the pain receded. For me, it lifted that depression. Little by little as the pain went away I felt more confident but I was still scared that "it" would get me. Over a year later, I can look back and see how this disease was the thing that really changed my mood. For me, prednisone was a savior.

I am not saying you are me. YOU may very well have a response to prednisone that is completely different than others since this drug has time and again shown that very fact. We are all so different in how we react to it. My doctor has treated about a dozen PMR patients in the last ten yers in our rural county. Most of her patients hated prednisone and it drove them crazy. They were jumpy, anxious, driven, and just unhappy with it. She said I am the only one that "liked" prednisone. It was a weird feeling being on it at high dose. Someone else was in charge of my body. I kind of surrendered to it . It lifted my pain, hopelessness, and I sleep better than ever in my life.

Maybe put the rotor cuff surgery on the back burner for now. Lots more immediate to take care of. I strongly suggest you do not overwhelm yourself with that surgery. (My wife had rotatorcuff surgery the very week I was coming down with PMR. I was useless to help her. Didn't I say it comes in piles?!)). I found that my knee pain (messed up cartilage via an MRI) that came on a week before the PMR was gone after my PMR was successfully treated and I was off prednisone for months. The PMR did not directly effect my knee on a daily basis with PMR but it was a bellwether pain that signaled PMR was starting. Lots of pains are worth evaluating after PMR.

Good luck and thinking of you.

REPLY

It is worth looking at new research that points to depression being more to do with the inflammation linked to PMR than the steroids taken to calm the PMR. Look for The Inflamed Mind by Prof Edward Bullmore. Or just google those words. His research takes us beyond the 'well he'she's got a difficult illness to cope with of course he/she's depressed' scenario to understanding that the inflammation causes the depression and can be treated.

REPLY

Prednisone made me feel like Superman. I'd still be on it except for a subsequent SMM diagnosis. I've had 5 shots of kevzara. It's an entirely different avenue of relief than steroids. My depression was pre-prednisone when I could barely walk and sleep only came in spurts through exhaustion.

REPLY
Profile picture for petermccarville @petermccarville

@sunnsky7711. Sorry to hear about the complications. Poop does come in piles! But, it sounds like you are on a good path of research and discovery for yourself. I would not pit PMR vs. Depression/anxiety. It is not one or the other. You can beat PMR with the Kevzara which acts completely differently than the prednisone. Sounds like you are going in the right direction towards health with Kevzara . Lots of help with Kevzara available here.

I would like to suggest that it may not be the Prednisone that is creating the anxiety and depression. An alternate idea is that it is the PMR. I found that, for me, the IL6 and other nasty cytokines (ones in overdrive for no apparent reason) , that are major players in PMR, do the mood and mind alteration That is not a scientific fact but my opinion. I felt like, and others have written ,that IL6 is the devils molecule. It can actually create depression and a sense of doom according to one study that I read (and cannot find for referencing). I certainly had that at 3-4 AM every morning while on my PMR journey (pre-prednisone). I had terrible nightmares unlike any other in my life my first weeks of PMR. I woke in dread. The "boogie man" was quite extreme at those hours of the day for me.

I also would suggest that depression/anxiety is part of a response (normal response?!) to a frightening and chronic illness. Why would we not have a feeling of hopelessness when our lives so quickly have changed for the worse? It is terrifying and nobody without PMR seems to get it. It is quite lonely, I recall. I went from being very vibrant (physically working on my farm and skiing deep powder in CO) to not being able to dress myself within a week. That scared me to death at first and then the uncertainty of my future settled-in in the next few weeks. I figured I was doomed to eternal pain and would die without having been able to do anything more. It was so sad to see myself dying (I thought). I really saw my life and actions coming to an end. I also had anxiety about what I would do about all the loose ends in my life , both physical and emotional. It was a dreadful state that I did not even share with my therapist . I was so hopeless. However, when I took prednisone at its full dose, I started to see a glimmer of hope as the pain receded. For me, it lifted that depression. Little by little as the pain went away I felt more confident but I was still scared that "it" would get me. Over a year later, I can look back and see how this disease was the thing that really changed my mood. For me, prednisone was a savior.

I am not saying you are me. YOU may very well have a response to prednisone that is completely different than others since this drug has time and again shown that very fact. We are all so different in how we react to it. My doctor has treated about a dozen PMR patients in the last ten yers in our rural county. Most of her patients hated prednisone and it drove them crazy. They were jumpy, anxious, driven, and just unhappy with it. She said I am the only one that "liked" prednisone. It was a weird feeling being on it at high dose. Someone else was in charge of my body. I kind of surrendered to it . It lifted my pain, hopelessness, and I sleep better than ever in my life.

Maybe put the rotor cuff surgery on the back burner for now. Lots more immediate to take care of. I strongly suggest you do not overwhelm yourself with that surgery. (My wife had rotatorcuff surgery the very week I was coming down with PMR. I was useless to help her. Didn't I say it comes in piles?!)). I found that my knee pain (messed up cartilage via an MRI) that came on a week before the PMR was gone after my PMR was successfully treated and I was off prednisone for months. The PMR did not directly effect my knee on a daily basis with PMR but it was a bellwether pain that signaled PMR was starting. Lots of pains are worth evaluating after PMR.

Good luck and thinking of you.

Jump to this post

@petermccarville thank you so much for the kind and uplifting words. I needed those. Glad to be in this page as I journey on this scary path. Good to know others are there to help me along and I can help them as well as we all move forward.

REPLY
Profile picture for bettebaldwin @bettebaldwin

It is worth looking at new research that points to depression being more to do with the inflammation linked to PMR than the steroids taken to calm the PMR. Look for The Inflamed Mind by Prof Edward Bullmore. Or just google those words. His research takes us beyond the 'well he'she's got a difficult illness to cope with of course he/she's depressed' scenario to understanding that the inflammation causes the depression and can be treated.

Jump to this post

@bettebaldwin thank you! I’ll
Look that up!

REPLY
Profile picture for kjoed53 @kjoed53

Prednisone made me feel like Superman. I'd still be on it except for a subsequent SMM diagnosis. I've had 5 shots of kevzara. It's an entirely different avenue of relief than steroids. My depression was pre-prednisone when I could barely walk and sleep only came in spurts through exhaustion.

Jump to this post

@kjoed53
The prednisone caused anxiety and depression and as soon as I tapered I felt relief. Had this happen before with an out of optic neuritis. Hoping this is the week I can go in Kevzara. Have had pre bloodwork and it looks good so far! Thank you so much!

REPLY
Profile picture for petermccarville @petermccarville

@sunnsky7711. Sorry to hear about the complications. Poop does come in piles! But, it sounds like you are on a good path of research and discovery for yourself. I would not pit PMR vs. Depression/anxiety. It is not one or the other. You can beat PMR with the Kevzara which acts completely differently than the prednisone. Sounds like you are going in the right direction towards health with Kevzara . Lots of help with Kevzara available here.

I would like to suggest that it may not be the Prednisone that is creating the anxiety and depression. An alternate idea is that it is the PMR. I found that, for me, the IL6 and other nasty cytokines (ones in overdrive for no apparent reason) , that are major players in PMR, do the mood and mind alteration That is not a scientific fact but my opinion. I felt like, and others have written ,that IL6 is the devils molecule. It can actually create depression and a sense of doom according to one study that I read (and cannot find for referencing). I certainly had that at 3-4 AM every morning while on my PMR journey (pre-prednisone). I had terrible nightmares unlike any other in my life my first weeks of PMR. I woke in dread. The "boogie man" was quite extreme at those hours of the day for me.

I also would suggest that depression/anxiety is part of a response (normal response?!) to a frightening and chronic illness. Why would we not have a feeling of hopelessness when our lives so quickly have changed for the worse? It is terrifying and nobody without PMR seems to get it. It is quite lonely, I recall. I went from being very vibrant (physically working on my farm and skiing deep powder in CO) to not being able to dress myself within a week. That scared me to death at first and then the uncertainty of my future settled-in in the next few weeks. I figured I was doomed to eternal pain and would die without having been able to do anything more. It was so sad to see myself dying (I thought). I really saw my life and actions coming to an end. I also had anxiety about what I would do about all the loose ends in my life , both physical and emotional. It was a dreadful state that I did not even share with my therapist . I was so hopeless. However, when I took prednisone at its full dose, I started to see a glimmer of hope as the pain receded. For me, it lifted that depression. Little by little as the pain went away I felt more confident but I was still scared that "it" would get me. Over a year later, I can look back and see how this disease was the thing that really changed my mood. For me, prednisone was a savior.

I am not saying you are me. YOU may very well have a response to prednisone that is completely different than others since this drug has time and again shown that very fact. We are all so different in how we react to it. My doctor has treated about a dozen PMR patients in the last ten yers in our rural county. Most of her patients hated prednisone and it drove them crazy. They were jumpy, anxious, driven, and just unhappy with it. She said I am the only one that "liked" prednisone. It was a weird feeling being on it at high dose. Someone else was in charge of my body. I kind of surrendered to it . It lifted my pain, hopelessness, and I sleep better than ever in my life.

Maybe put the rotor cuff surgery on the back burner for now. Lots more immediate to take care of. I strongly suggest you do not overwhelm yourself with that surgery. (My wife had rotatorcuff surgery the very week I was coming down with PMR. I was useless to help her. Didn't I say it comes in piles?!)). I found that my knee pain (messed up cartilage via an MRI) that came on a week before the PMR was gone after my PMR was successfully treated and I was off prednisone for months. The PMR did not directly effect my knee on a daily basis with PMR but it was a bellwether pain that signaled PMR was starting. Lots of pains are worth evaluating after PMR.

Good luck and thinking of you.

Jump to this post

@petermccarville well said…..
My tip…..get a circle of support friends. They listen, keep you company , just hang out. Get out of as much “alone” time as possible.
Journal your daily pain level, meds and exercise and weather. You will be able to look and see the days that “weren’t as bad”….there is hope.
You are looking for a bit of “up” everywhere and everyday.
If access to a pool, get in and walk, float disconnect.

REPLY
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